Hi Modge ...... I missed this post earlier on....... we have three granddaughters are staying 
I don't think that you are useless in any way....... you are doing what you can do...... it's the 'system' that is at fault in not being able to look at this comrahesvilay.
I am surprised that they have not done a biopsy on him as this can rule in or out what this may or not be.
Just do what you have been told......at the very first signs that he is in anyway getting worse you ring his GP, ring 111 or use A&E...... but my think is do it the other way round.
What type of consultant did he see recently?
Supportive ((hugs))
I had a look back you posts but did not put this up…. I hope you don’t mind me asking but what was the reason for the change of consultants?
This can be challenging as on the whole the 'system' does not talk to each other so more often than not people like your son have to start at square one and navigate all the way through the process again.......
Did your son get his original Professor & Clinical director of Haematology to contact his new hospital/department?
It may be worth contact the original Professor & Clinical director of Haematology to contact the new centre directly (these folks all know each other) and mediate for him......... apart from this you are going to have to keep pushing and kicking the doors.
